A national harmonised data collection network for neurodevelopmental disorders: A transdiagnostic assessment protocol for neurodevelopment, mental health, functioning and well‐being

Abstract

Background Children with neurodevelopmental disorders share common phenotypes, support needs and comorbidities. Such overlap suggests the value of transdiagnostic assessment pathways that contribute to knowledge about research and clinical needs of these children and their families. Despite this, large transdiagnostic data collection networks for neurodevelopmental disorders are not well developed. This paper describes the development of a nationally supported transdiagnostic clinical and research assessment protocol across Australia. The vision is to establish a harmonised network for data collection and collaboration that promotes transdiagnostic clinical practice and research. Methods Clinicians, researchers and community groups across Australia were consulted using surveys and national summits to identify assessment instruments and unmet needs. A national research committee was formed and, using a consensus approach, selected assessment instruments according to pre‐determined criteria to form a harmonised transdiagnostic assessment protocol. Results Identified assessment instruments were clustered into domains of transdiagnostic assessment needs, which included child functioning/quality of life, child mental health, caregiver mental health, and family background information. From this, the research committee identified a core set of nine measures and an extended set of 14 measures that capture these domains with potential for further modifications as recommended by clinicians, researchers and community members. Conclusion The protocol proposed here was established through a strong partnership between clinicians, researchers and the community. It will enable (i) consensus driven transdiagnostic clinical assessments for children with neurodevelopmental disorders, and (ii) research studies that will inform large transdiagnostic datasets across neurodevelopmental disorders and that can be used to inform research and policy beyond narrow diagnostic groups. The long‐term vision is to use this framework to facilitate collaboration across clinics to enable large‐scale data collection and research. Ultimately, the transdiagnostic assessment data can be used to inform practice and improve the lives of children with neurodevelopmental disorders and their families.

Transdiagnostic clinical staging for childhood mental health: An adjunctive tool for classifying internalizing and externalizing syndromes that emerge in children aged 5-11 years

“…Finally, recognizing transdiagnostic risk for mental illness among children with very early neurodevelopmental phenotypes (e.g., autism, pervasive developmental disorders) is crucial to determining treatment needs in childhood. Early neurodevelopmental syndromes are often lifelong, associated with atypical cognitive, social and emotional development from the first years of life (Boulton et al, 2021). Consistent with views of neurodiversity, however, early developmental divergence is not always representative of disordered behavior requiring intervention (Sonuga-Barke & Thapar, 2021).…”

“…There is also growing recognition of the importance of identifying transdiagnostic risk factors across the major disorders in childhood (Boulton et al, 2021;. Comorbidity is the rule rather than the exception, with approximately half of children with one diagnosable disorder also having a second disorder (Egger & Angold, 2006;Wichstrøm et al, 2012).…”

Delivering paediatric precision medicine: Genomic and environmental considerations along the causal pathway of childhood neurodevelopmental disorders

“…The identification of missing heritability, polygenic, and multifactorial factors along the causal pathway for common neurodevelopmental disorders, and an understanding of how they interact in the diagnostic process, is critical to understanding causal pathways and developing therapeutic responses. A streamlined, standardized transdiagnostic approach is needed using validated measures for genetic, inflammatory, metabolic, and psychosocial risks and their influences longitudinally and dynamically, commencing from pregnancy for children at risk of/with neurodevelopmental disorders to direct a precision medicine approach to therapeutic options 28 …”

“…A streamlined, standardized transdiagnostic approach is needed using validated measures for genetic, inflammatory, metabolic, and psychosocial risks and their influences longitudinally and dynamically, commencing from pregnancy for children at risk of/with neurodevelopmental disorders to direct a precision medicine approach to therapeutic options. 28…”

Transdiagnostic Profiles of Behaviour and Communication Relate to Academic and Socioemotional Functioning and Neural White Matter Organisation

“…transdiagnostic framework into clinical settings are just emerging, and in due course we will start to gain insights into their efficacy and feasibility (Boulton et al, 2021). For now, we advocate transdiagnostic approaches, which align with the neurodiversity paradigm (Fletcher-Watson, 2022), as a means of promoting more inclusive research and practice.…”